Province won’t pick up $167,000 tab to treat woman’s painful disease

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This article was published 23/12/2021 (1097 days ago), so information in it may no longer be current.

A 37-year-old nurse afflicted with a disfiguring condition says the Manitoba government won’t cover the $167,000 cost of treatment that would drastically improve her quality of life.

Emma Cloney, who has advanced lipedema, is prepared to pursue a human rights complaint after consulting with lawyers.

“I’m already living in constant pain, what have I got to lose? Because I really need help. And I’ve screamed from the rooftops as a professional, begged, written letters. No one is hearing me.”

In July, after seeing 15 specialists, Cloney was diagnosed with the painful condition in which excess fat builds up on parts of the body. It can’t be treated with diet or exercise. Instead, it requires a procedure known as lymphatic sparing liposuction, which isn’t available in Manitoba.

She was told she would need to find a lipedema specialist outside of Canada, likely in the United States or Europe.

The endocrinologist that confirmed her diagnosis applied to Manitoba Health for out-of-country medical coverage after picking a U.S. surgeon and setting up a surgical plan in November.

The application included 36 scholarly articles, letters from eight plastic surgeons in Manitoba who confirmed Cloney’s diagnosis and agreed she couldn’t be treated here.

On Nov. 25, the application was denied; it stated she could get liposuction in Manitoba.

While liposuction is considered an effective treatment for lipedema, Cloney said getting the basic liposuction that’s offered in Manitoba can result in lipedema getting worse and becoming lymphedema, which fills the limbs with fluid. Lymphatic sparing liposuction is not cosmetic and can only be administered by a specialist.

She’s currently on disability because she can’t walk without being in excruciating pain.

Her second application for funding, which included more evidence, was denied Dec. 16.

The full procedure would take three or four surgeries, three months apart and would cost $167,000.

Her first surgery is scheduled for Jan. 4, and she still has no way to cover the cost.

“The amount of advocacy that we’ve brought to them, the amount of scholarly research we’ve brought to them is just absolutely undeniable, no reasonable or prudent medical professional would deny this information,” Cloney told the Free Press. “But here I am… being told that I’m on my own, and they won’t help me.”

She reached out to Health Minister Audrey Gordon, but nothing changed.

“It just simply comes down to the fact that this is a legitimate, recognized medical condition, same as cancer, same as diabetes,” she said.

“I’m a care provider… and I can’t get health care here.”

“I’m very sad that I can’t go back and join all my nurses right now. I’ve given the best of myself to nursing. And I’m just asking for the province to just give me the care that I need so that I can get back to my life.”

Typically, requests for out-of-country care are submitted to Manitoba Health and then to a medical consultant, who doesn’t necessarily have experience related to the person’s condition.

A spokesperson for the province said they wouldn’t comment on the specifics of Cloney’s case and said there were “many potential variables” to covering out-of-country care.

“The province considers these requests on a case-by-case basis so it would not be appropriate to generalize about what does or doesn’t meet the criteria,” the spokesperson said in an email. “Included in the consideration is a review of the standard of care and whether or not procedures can be done in (Manitoba) or Canada are conducted prior to sending clients out of country.”

Gordon’s office did not respond to requests for comment.

Cloney said she’s heard of two other women with lipedema having their surgery covered in the U.S. Lipedema typically affects women, and is often misdiagnosed as obesity. It’s likely that many people in Manitoba have it but haven’t sought help.

“People are being told that they’re not trying hard enough, and people are living in agony. People like my mother, people like my daughter, who’s now been diagnosed because of my diagnosis,” she said. “So this isn’t just one rare condition. This is a legitimate medical condition that’s been in the books since 1940.”

In 2017, Winnipegger Sandra McCrea went to Germany for life-changing treatment for lipedema. McCrea, like Cloney, was denied coverage and took it to the Manitoba Health appeal board, which denied her appeal.

“It shouldn’t be that years later, the same exact situation is happening again, when so much evidence has come forward to support treating women with lipedema with humanity, with care, with compassion, and with the treatment that we deserve,” Cloney said. “I shouldn’t have to lose my entire retirement savings, basically bet on my future, so that I have any quality of life right now. That’s not fair.”

malak.abas@freepress.mb.ca